Advocacy Support Service


Email Support

We appreciate that picking up the phone and asking for help can sometimes be daunting and therefore we have a special email address for you to email your questions if phoning is just too difficult.


Disability Benefits

We can advise you on the different benefits that are available and how any changes may affect you. We provide help and support in completing these often complex forms and where needed, we can also represent you in appeals and tribunals. For more information visit our Benefit Information page.


Housing and Equipment

We can support and advocate on your behalf to help you get the most appropriate housing and home adaptations to meet your needs. For more information please visit our Housing Information page.



We can help you get the most appropriate education for your child, informing Statements of Special Educational Needs and running information workshops for schools and other professionals.


Independent Living/Transition

We provide advice, information and support through the transition from child to adult services. This could include access to independent living, learning to drive, further education and employment.


MPS Befriending Network

We link individuals and families affected by MPS and related diseases so you can share experiences and gain mutual support.


MPS Careplans

We undertake a comprehensive individual assessment of the issues which need to be addressed when caring and providing support to a child or adult diagnosed with an MPS or related disease. This includes issues such as personal care requirements, identifying individual needs, risk assessment and emergency guidelines.


Respite Care

We work closely with a number of respite providers such as hospices and, where appropriate, can make individual referrals. For more information please visit our Hospice Resources page.


Bereavement Support

We can provide a supportive role in the planning of palliative and end of life care. We provide support at the time of bereavement and we are still here to support you following your bereavement offering a helpline service and practical advice. For more information please visit our Bereavement Support page.

We also offer an opportunity to plant a tree in memory of your loved one at our beautiful Childhood Wood.